Second Opinion

I went to a different neurologist last week. Actually, he’s a professor who taught my neuro. As Dr. P and I were stuck, it seemed like a good idea to get a fresh perspective.

Although he didn’t say it to me personally, he was as much at a loss as Dr. P. He did remind us of a few treatments we haven’t tried, and told me about a headache I’d never heard of.

Treatment ideas:

  • Botox – If you’ve seen any headache news in the past few years you must have read about the use of Botox in treating migraines. It consists of 31 injections given with very fine needles into the head and neck. It takes up to four weeks to see results and the treatment is repeated every 3 months.
  • Nerve Block – I had an occipital nerve block done last year, but it didn’t help. It might help to try blocking other nerves on my head.
  • Or we could consider the headache I’d never heard – Pseudotumor. Pseudotumor is caused by increased pressure in the brain. A spinal tap is performed to measure the pressure of cerebrospinal fluid that surrounds the brain and spinal cord. If there’s too much pressure it could be the cause of my headaches. It’s aptly named pseudotumor because the symptoms mimic that of a brain tumor.

I don’t think it likely I have pseudotumor, as there are symptoms that don’t line up with mine. Though if nothing pans out, it may be worth a check. Nothing else seems to match my symptoms either!

I believe I’ll be trying the Botox soon. I’ll post about it when I do. Maybe I can even take my personal photographer with me and liven things up on this blog with some images.

A Laundry List of Medications

Through the past few years I’ve tried many different medications to treat my headache(s).

When I had migraines I used ibuprofen to treat myself. My physician prescribed a few abortives: Maxalt, Imitrex, and one other I can’t remember. They never helped, so we tried Topamax as a preventative. The Topamax left me feeling very out of it and with numbness so I quit trying.

Trying to diagnose and treat my ongoing headache has been a whole new battle. And a new, longer list of medicines, doctor’s visits, and other treatments.

I’m listing them here partly for my own records and partly to help illustrate what a trial this has been. (Literally really, for much of it has been trial and error.)

Indomethacin (11/10/2011): It was the obvious first choice with Dr. P. We both were convinced I had Hemicrania Continua. I felt a tiny bit of relief, which was hopeful, but not enough.

Gabapentin and Zonegran (12/2/2011 and 1/9/2012): Another HC treatment, but no help at all. Well, I did find that my ordinary migraines decreased.

Indomethacin (1/16/2012): Again, higher dose. No help.

In office Steroid Infusion (1/18/2012): The nap in the infusion room helped a bit, but not the meds.

Celebrex (1/25/2012): Nothing

Nerve Block (2/22/2012): Nada. A nerve block, by the way, causes one of the oddest feelings. They numb the back of your head and  inject meds. It doesn’t feel very good, but soon you don’t really feel it. When finished, the back of your head is lumpy with pockets of liquid meds not yet absorbed. The next week the back of my head was sore but there was no headache relief.

Indomethacin – maximum dose 300 mg per day – plus Sucralfate and Omeprazole to protect my stomach (2/25/2012): No good, and still upset stomach.

Visit with a Neurosurgeon (3/21/2012): There is a surgical treatment for HC and other chronic headaches. It is the implantation of a small device that stimulates the occipital nerve. If I could get insurance approval, this looked like a good suggestion.

Visit with a psychologist (4/5/2012): One of the steps in getting approval was to visit a psychologist to be certain you are in good enough mental health to benefit from the surgery and to care for yourself. Verdict was that I am not insane, and only the slightest bit depressed. (Which is to be expected when dealing with a chronic illness.) It was a waste of time and money though, my insurance company never approves this surgery.

Gralise – extended release, high dose Gabapentin (4/25/2012): This was an expensive drug, but to no avail.

Nortriptyline (5/23/2012, 6/7/2012, 8/8/2012): This is the medicine that I stuck with the most. It didn’t relieve my headaches really, but allowed me to better sleep through them.  I kept going back to this when other options didn’t help. At this point I also realized that I had been free from my ordinary migraines for some time.

Lyrica (8/17/2012): nope

DHE – and a host of other meds (10/22/2012)  At this point Dr. P. finally conceded that HC was definitely not the cause, and that he had seen nothing like my headache. This was an awful revelation. I like being unique, but not in this case. No one headache description fits mine, so this was an inpatient stay as a last ditch effort to rule out migraine. It definitely ruled it out. I went in with a severe headache and came out with a severe headache. I’m glad I tried it, but I was (and still am) very disheartened.

Depakote (11/6/2012): This we tried at my request. It was one of the drugs I tried in the hospital and I though a longer trial might help. It didn’t.

I’ve been trying to keep moving along, hoping for a treatment but not setting things aside to wait for one.

It’s wearing on me, though.